'S' is for...

Sip


Sit
Last week, Gracie started requesting to sit in her red chair after school - - an indication that she's feeling stronger and wanting to pull herself up to stand, which, up until last week, she hadn't really done much of this since being discharged from the hospital.

'S' is also for silly toes... check out what Gracie's doing with her feet!

Signing Time
A favorite "wind-down" after school is watching a "Signing Time" DVD or her favorite signing episodes of "Blue's Clues."

Stand
Deja Vu!
On the left: February 2008
On the right: September 2010
They're both taller, especially Preston. They both have more hair, especially Gracie on the back of her head! And, they both are wearing fewer clothes!

Since Gracie started pulling herself to a stand and trying more physically last week, I called to set up an evaluation appointment to resume PT and OT services. We had the evaluation this week and will hopefully resume her twice weekly schedule in the next couple of weeks. Next, I'll work on getting her VitalStim resumed.

Sleep
After a birthday party last Saturday and what I fondly refer to as
"Bounce House Coma"
Gracie was out first (her eyes are open because she can't close them!) and Preston was only behind her by about five minutes!
And, yes, 'S' is also for strip... Gracie no longer wears a shirt in the car. If we put one on her, she will have it off in a flash! And, if she can't get it all the way off, she is hysterical until I pull over and help her. Thank goodness for my limo-tinted rear windows!!

'S' is for... Sweet (mostly) things he says

More from the mouth of Preston...

Wednesday, August 11
While Gracie was in surgery, Preston told Nana he wanted to send mama a text. Using Nana's phone, he texted all kinds of gibberish with furiously fast thumbs. When Nana asked him to read it, he said, "Dear Jesus, my mommy."

Late that night, he asked to send another text that was so many characters it was multiple messages. Translated, it read, "Dear Jesus, I love you. From me, Jonah and Ella. (Jonah and Ella are twins and his good friends from school.)

Before Nana left for Georgia...
Preston went potty. Then Nana said she was going to go. He told her to go standing up like him. She explained that she can't go like that because she isn't a boy. He insisted, "Yes you can, Nana. I will show you how..." He has since also offered to help me do the same!

Monday, August 16
John and Preston walked in the front door and the mail had been dropped through the door mail slot and was lying all over the floor in the entryway. Preston picked up the mail and yelled, "Daddy I got mail. To Preston, I love you, from Jesus!"

August 23, 2010
Two days after Gracie was discharged, we set up the pools for the kids in the backyard and all four of us played... splashing, soaking and just hanging out. Gracie, Preston and I were in the bigger pool and John was getting ready to take a picture. Preston said, "We are a family again."
Sigh.

August 26, 2010
Preston and I were doing chores in the backyard. He saw a dandelion, picked it, blew it all over the place and went on his merry way. A moment later, I spotted another one (yes, we have a lot of weeds within our grass...) and pointed it out to him. He picked it and said, "I wish Gracie will feel better," and then blew it all over the place.
Be still my heart.

September 18, 2010
I could hear Preston laughing in the family room where he was playing and Gracie was watching her favorite signing episode of "Blue's Clues." I peeked over the counter to find him half sitting-half straddling her.
I said, "Preston, what are you doing?"
"I'm tooting on Gracie!" he giddily exclaimed.
"Preston, that's yucky... and you might hurt her."
To which he replied, "She likes it, Mama and I'm being careful."
And so the brotherly bodily function torture begins...

September 26, 2010
I took Preston to a birthday party... Gracie did not come with us. Preston was having a blast while I looked on, all the while feeling like I was missing a limb without my girl there to look after. Anyway, Preston slid down the giant slide, jumped down, and as he started to go back up the stairs, he suddenly turned around to me and said, "Wait, I have to go check Gracie." I had to remind him that she wasn't with us. (This was a good thing... as much as she loves bounce houses, she would have been trampled at this party as there wasn't a "calm" inch of bouncing space in the place!)

The day before we were at another birthday party at a different bounce house place and he periodically ran back to us to see that she, too, was having fun. "Checking her" means a variety of things for him... is she happy, does she need help, does she need to be cleaned up from coughing, does she have her diaper on, does she need a toy. I love that he loves her that much. I love that it is second nature to him to want to "check her." I love that he knows his sister is special and needs extra help and that he doesn't see her as anything other than his sister.

'S' is for... School Bus

Gracie is riding the school bus again!

On Thursday afternoon, Gracie finally got her first school bus ride of the year. She was really happy (especially to see her bus aide, Kathryn), though I think a bit in shock! It has, afterall, been a long time since she's been on the bus. Between changes within the district regarding transportation, Gracie's multiple appointments, her overall health at the beginning of the school year and some issues with plain old logistics, I have been driving her.

She rode Thursday and Friday afternoon, which allowed us to work out some significant kinks (like they forgot the carseat and they put her on a bus without air conditioning, the later caused her to overheat and get sick Friday afternoon... grrr). Starting in October, she will ride in the afternoons four days a week and hopefully her mornings will be worked out soon... without any additional kinks!

'S' is for... Sun Hats and Space Ranger

Gracie is finally getting the hang of wearing a hat in the sun! The sunglasses, well, that's a different story. Usually, five minutes max!

My little Space Ranger loves helping Buzz Lightyear blast Zurg on the Toy Story ride at Disneyland. (So does his mommy... it's really fun!)
On the way home, he goes directly to, "Infinity and Beyond!"

'S' is for... Sing! (Glee!!!!!)

In honor of tonight's season premiere of Glee (as this mama is super excited for said premiere), I have put together a montage our resident show choir star!
He sings a lot and this video includes footage taken of him since March.
Enjoy our silly singer... it's showtime!

Make video montages at www.OneTrueMedia.com

'S' is for... Story Time

From May... two kids, me, some stuffed friends and a pile of books all scrunched into a toddler bed!
It's hard to sign the books when we are squished up like that, but sometimes the most important thing is just being smushed together!

'S' is for... Seal Beach National Night Out

This year's "National Night Out" was August 3rd. Since Gracie was admitted back to the hospital on the 2nd, our plans to attend as a family were obviously scrapped. It was an event that Preston was really excited about and we didn't want him to miss it. So, while I stayed with Miss Gracie in the ICU, John took Preston and met up with our friends, Dave and Danny, for a little "man time" at the pier.

So much to see!

'S' is also for... Super good buddies, Danny and Preston

A boys night out isn't complete without hot dogs, police cars
and, for John, handling a weapon!
Preston was being camera shy, but did like wearing that helmet!

'S' is for... Siblings

Taken on Labor Day after John set the kids on the roof of the car...

Gracie grabbed Preston's hand and was trying to get him to squish her cheeks and give her a bit of a face massage.

The more she squished, the more he laughed.

The more he laughed, the more she smiled.

Happy Boy

Happy Girl

'S' is for... Stunts

'S' is also for...
"Somebody please stop him before he gives his mother a heart attack!"

Preston, who insists he's almost four despite having turned three in May, moves so fast and does such crazy stuff that, lately, I cut off his head in many of his pictures!

'S' is for... Slide

"I'm very careful and I don't need any help at all, thank you very much!"

'S' is for... Special Olympics

On June 12-13, the Southern California Special Olympics were held at California State University Long Beach. If you've ever been involved in the Special Olympics, you know that it's a wonderful, inspiring experience. You also know that law enforcement plays a huge role in both the fundraising for the events and the games themselves.

In California, local law enforcement agencies and specialized agencies are out in force, supporting the athletes and their families. Aside from the athletic events, one of the highlights for many of the participants is a photo-op with "Chipper" from the California Highway Patrol. This year was no exception. And, I am quite certain there has never been a more appropriate officer in the role of Chipper... both in personality and life experience.

Chipper giving an Olympian a big smooch

Chipper bustin' a move

Unfortunately, the kids and I arrived after Chipper had left. Well, sort of...

"Chipper" with his family

Yep... that's my husband. And yes, he had fun as Chipper! I am so bummed that we missed it, but very grateful for the pics. The weekend was just days before Gracie went in to get her PICC line placed and she wasn't feeling that well, thus, she didn't enjoy it as much as I hope she will next year. Preston made a valiant effort to have enough fun for both of them - - though, from the photos, it's hard to tell! He was quite overwhelmed by the photographer wanting to get so many pictures!







That's "Barbie" with us... Gracie wanted to touch her earrings and dress so badly!

'S' is for... SWAT

Preston was in hog heaven climbing around the SWAT tactical vehicle

'S' is for... Sick Day

Gracie's sick. Not the scary, hospital kind of sick, "just" sick... again.
And she missed school today because of it. Bummer.

I've suspected something big was brewing the whole week as she's been needing tons of sensory input, won't keep her clothes or shoes on even in the car and has had that "look" in her eyes. Sinusitis, Tracheitis and still an ear infection that had been percolating the week she got home. Ugh. The tracheitis is frustrating because she is currently mid-cycle on her bi-monthly TOBI treatments (an inhaled antibiotic to help with pseudomonas, tracheitis and overall lung function). So, she's been prescribed an additional antibiotic again.
She's uncomfortable, clingy, her nose is running, her eyes are running, her oral and trach secretions are non-stop. We can literally "tip her over and pour her out." I quote the lyrics from "I'm a Little Teapot" because that's actually what John does sometimes when she's like this - - he helps her drain. We sing it to her (she can't hear us, but Preston can and he'll do the little dance for her). It sounds a little barbaric, but it gives her a tremendous amount of relief much faster than constant suctioning. Gross, I know.

She had a bevy of appointments this week.

Surgical follow-up: He is very pleased (as are we) with how she's doing from that standpoint. Her weight-gain is good (31.6 lbs and not much is fluid retention) and she's tolerating her current feeding regimen well - - something we didn't dare to dream possible. (With this current illness, I've had to slow her feedings down considerably because she is coughing so much which makes her prone to gagging and is hard on the fundo.)

Cardiology: She is "stable." He is pleased that, with all her body endured since May, her heart managed to come out the other end without worsening. The echo looks "good for Gracie... which means it's unchanged."

Infectious Disease: She was not pleased about my suspicion that Gracie was getting sick, but feels that Gracie's issues are likely not stemming from an immune disorder. She has ordered a full immunological work-up to be certain and we will complete those labs once she's well and we have endocrine labs to combine into one draw.

Pulmonology: He prescribed the antibiotic. We discussed the different ways we can treat this recurring issue, which are limited due to her resistance to so many meds. He reiterated some things from the hospital... He is pleasantly surprised with how her lungs look on the Chest CT - - he had expected them to look much worse. He paid us a high compliment again, saying that her status is clearly the result of diligent, constant care. He also stated that, because of her swallowing issues, this problem is not ever going to be solved, rather "managed." She will always be a junky trach and she will always (and probably more frequently now) be fighting bugs as her lungs continue to deteriorate over time.

On the horizon: ENT, GI, Neurology, Ortho, Endocrinology, Audiology.
Good grief.

'S' is for... Sage

Two little toe-heads, Preston and Sage, indulging me for a quick picture in the midst of playing basketball.

The Wednesday after Gracie was discharged from the hospital, we had a quick visit from John's older sister, Satia, and her six year-old daughter Sage. John's dad, Grandpa John, also drove up from Mexico. We haven't seen them (Satia and Sage) in a few years, so this was their first time meeting Preston. Unfortunately, I only took a few pictures and since Gracie was not feeling well, she isn't in any of them.

Sage is a sweetheart and played really well with her cousin whom she'd never met and is half her age! Preston has asked about her nearly every day since.

A "hug train" with Grandpa John

'S' is for... Skype

Gracie and Preston thoroughly enjoying their first Skype session with Nana and Papa.
Preston was so happy and hamming it up, while Gracie was absolutely mesmerized.

Making Faces
Nana and Papa were making silly faces (at Preston's request - - or maybe it was Papa's...) and the kids were copying them!

Even though we've lived over 500 miles from Nana and Papa for nearly two years, we never Skyped with them, yet we talked on the phone almost daily. Now that they live in Georgia, the time difference makes it a little harder to talk as often, especially with everyone's crazy schedules. We are definitely feeling the distance from them now - - just knowing they're across the country makes us miss them that much more. In an effort to bridge the gap, I finally downloaded Skype and the kids had their first (very funny) video call with them on Saturday. Needless to say, we will be doing this all the time! It was great for Gracie, too, since she obviously doesn't get to talk on the phone! She signed "I love you" right back at them and spent most of the conversation staring at the screen in awe. During Monday's Skype with them, she was cracking up at Nana and tried to lay directly on the computer.

Why I didn't do this sooner is beyond me... but we've got it now and intend to use it often!

'S' is for... Share

Addison, our dear friend and neighbor, received a pink Escalade (complete with working stereo) for her 3rd birthday. Such a gift is quite impressive to a boy like Preston who, like his Daddy, is very much into cars - - or anything with wheels, for that matter.

She is referred to by Preston as "my Addie" and "my girl, Addie" which makes this picture even more hilarious to me (and to all the adults who know the kids in the 'hood'). I literally laughed out loud at the hospital when I saw it for the first time and it still makes me laugh!


Preston is furious! (The bewildered looking passenger is Adam, another neighbor, who lives two doors down!)

Rachel (Addie's mom) asked, "Do we think he is mad about sharing the car or the girl?"
Definitely both... but mostly the girl, I think!

Just in case you need a reminder of how sweet and nice he usually looks... here he is! Ha!

'S' is for... Snuggle

It's amazing to me how gentle and careful Preston is most of the time! The truth is, we make him be far tamer than Gracie actually wants him to be! We tell him that he is hurting her and he corrects us and says, "No, she likes it!" And, most of the time, he's right because she's laughing and signing "more." They have their very own way of snuggling and "wrestling" with each other that is so sweet and though it freaks out my nerves, I really do love watching them play like this!

'S' is for... Strike a pose!

Skater Dude, Studious Man (in Mama's glasses), and Surfer Dude

Just a few of the "hammin' it up" poses from Preston this summer!

'S' is for... Second Grade

All dressed and ready... now let's go!!!
Thanks for the super cute blouse, Auntie Vanessa and Uncle Brian!

So very excited to be on campus again!
She's not in her manual wheelchair due to her strength and because the canopy is out for repair.

Back in the calendar routine as though she'd been there just yesterday!

Gracie started second grade on Monday. Second grade.

It was such a gift that I happened to be on campus (and in her classroom) going over some things with Cathy, the nurse, during calendar time. Gracie remembered the routine, signed, "Gracie, me" and was ready to give ten to each student. When her friend Kaelyn went through the circle giving "ten," Gracie remembered that they did "ones" last year and stuck up each pointer finger at Kaelyn. The whole scene was wonderful, but took my breath away so much that I had to turn around, bite my lip and furiously blink back tears. There were many moments over the summer that we didn't dare imagine this would be possible.

Because she'd turned such a corner Saturday evening and had such a good day Sunday, we thought we'd give school a shot. It is, after all, a huge source of joy for her. We have all other therapies on hold for now and are just focusing on regaining strength and stamina as well as re-establishing a routine. While the "school drama" hasn't been resolved, we are sending her under the terms of her current IEP and with the faith that the issues will be resolved in a timely and fair manner.

She has been exhausted at the end of each day and today was so tired that she fell asleep at 6:30pm. This adjustment will take time - - her body is still very much in recovery mode following the assault of the illnesses, infections and surgery this summer. She is slowly headed in the right direction... and she's in the second grade!